I had my 3rd infusion on Tuesday, and, touch wood, I think it is working. My average number of BMs is down from 7 a day to around 3. And no blood. It is amazing.

Even Remicade never did this for me. I still can't believe it. I have been sick for soooo long. I just hope it lasts...

The infusion itself was a disaster for the 2nd time in a row. I wish they would train NHS nurses how to operate an infusion pump, it would save me having to wait for 2 hours while they messed around with it, only to break it, lol. Took several attempts to get the IV needle in which REALLY hurt.

Its strange, after my 1st infusion I got BAD neck pains. After my 2nd I was fine (which led me to think I must have placebo). And now the pain is back. Weird.

I hate having to take a stool sample for every infusion, but its a small price to pay if it means I will get into remission for the first time in 5 years.

Finally, my thoughts on the Abatacept trial itself. I think it is flawed. You are not allowed to take ANY rectal meds, whatsoever (I think due to the fact they use flex sig to assess your response) - for the whole 2 year trial. That is just plain silly. To get onto this trial, you must have refractory UC that has not responded adequately to all conventional meds. So, you would be a "difficult" to treat patient. It is common knowledge rectal meds are a must in such patients. So, to ban enemas/supps will inevitably mean many patients on the trial will not respond properly, who otherwise might have done - and thus impacting the likelihood of Abatacept getting a licence.

thanks for sharing.....good to know there may be another option for us. Also, I agree w/cats, I think they need to know how effective the abatacept is on it's own.Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission

That's the point I am making - you ARE allowed other meds. I am on Prednisolone, Azathioprine and Colazal. So, who knows if one of these is finally working? You can take oral meds on the trial (with a few exceptions) but NO rectal meds.

I personally think rectal meds are only effective at treating very mild flare-ups/UC cases, & just possibly they can halt a flare-up or prevent it from worsening, provided you use them like 3x a day. This is just based on personal experience- when I was initially diagnosed with ulcerative proctitis, I used Rowasa enemas daily & they worked well, since my condition was really mild at that time. I have also used the steroid enemas many times since then, when my condition was pretty bad, & they did absolutely nothing. Maybe the rectal meds somehow inhibit the pharmaceutical action of the Abatacept? Although that doesn't seem likely, since it's a TNF blocker, no? I am considered to have refractory UC, by the way.